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"The underlying psychological part of diabetes wasn't recognised"

John, a retired social worker and former Merchant Navy Chaplin, didn’t face up to having Type 2 diabetes for seven years, despite pleas from his family and medical staff and clear warning signs. He and his wife Kath have three children and five grandchildren and share their Cardiff home and life with an adult with learning difficulties who has been in their care for 15 years.

John Lewindon
Aged 67
Living with Type 2 diabetes since 2009

"Had someone sat me down and talked about that emotional impact of having diabetes, I might have been more honest, said I resented it and begun to have the conversations that would help me open up to the psychological aspect and be more proactive earlier in terms of the management."

John’s journey with diabetes

Diagnosed with Type 2 diabetes just over 10 years ago, six months after being told he was at risk of the condition.

Resented the diagnosis and was in denial. Rarely tested his blood or went to his medical checks, and didn’t change his diet or lifestyle.

In October 2017, became unwell, went into hospital and was told he was lucky to be alive.

Started talking about his diabetes and accepting it, changed his lifestyle and has gone on to lose nearly five stone.

Diagnosis and emotions

The word is relentless because that's how it feels. My first response to being diagnosed with Type 2 diabetes was one of frustration. Resentment. I didn't want to be diabetic. I was frustrated that my body wasn't going to do what I wanted it to do. And it mean changing my lifestyle which at the time I wasn’t really prepared to do.

My wife and I were with my daughter up in Ripon one day and I remember waking up on the Friday morning and being very, very breathless. They rushed an ambulance to me. I remember sitting on the side of the bed waiting and hearing the ambulance coming in the distance as it was racing towards me, looking into the eyes of my wife and daughter and thinking 'I'm not ready to die'. This is self-inflicted and I’ve done this to them. This is the result of my non-engagement. I'd become increasingly unwell and I vowed then if I got through it, then I would start to make some changes to the way I lived. I would start to take this seriously.

Diet and lifestyle

My wife Kath said she was angry, cross, resentful, guilty and all the rest of it. But now she can see my diet and lifestyle has changed dramatically. Taking it seriously has had huge benefits for the whole family. We have a new phase, a new life.

I've got more energy and nearly lost five stone in weight. I'm taking exenatide (Bydureon) and metformin but my goal is to come off the medication and lose 40 more kilos.

Support from others and Diabetes UK

I found motivation and encouragement from a Diabetes UK local support group and becoming a Diabetes UK volunteer in Wales. It’s great to meet with other people and be as much of an encouragement to them as they are to me. When I tried to do it on my own in my own little world, my own little box, I couldn’t do it. With support from other people with diabetes saying 'we can do this together' has really, really helped. I can't talk about something I'm not living. So I can't talk to other people with Type 2 diabetes and say 'this is what you need to be thinking about' and go home and stuff my face and not think about my diabetes.

And it's helpful, it's just reassuring to come home and say well I'm not the only one that feels like throwing their meter across the room. I'm not the only one who feels resentful that I've got this condition. Having someone to talk to who could actually own the fact that it's a struggle and own the fact that it's an emotional response as well may have helped me own it myself then and talk about it.

"I'm not a thing, a machine. I'm a human being with all the emotions attached to it."

From someone being in denial to being an advocate, I can talk about what it’s like to be in denial about your diabetes. The more I talk about it with people the more I realise I am by no means alone.

Mental and emotional side of diabetes

I didn’t go for my checks and know many others who do the same. Deep down I think that because I resented my diagnosis, I just didn’t want to know. I thought, 'why me, why can’t I do what I want to do all the time?' Someone once said there’s a hell of a difference between the head and the heart. You can understand something in your head but until you accept it in your heart you’re never going to use the information you have in your head.

My doctor's practice is wonderful but I don't think they had the time in their 10 minutes appointment time to be able to sit down with me and say 'OK John, I've just told you that you have Type 2 diabetes, what does that mean for you? How do you feel about it?'.

"The advice was very much based on take the tablets, lose weight. The underlying psychological message I don't think was recognised or they had time to do it. But it was that that really made a difference to my ability to manage my Type 2 diabetes.

Did you know that 7 out of 10 people have felt overwhelmed by the demands of living with diabetes? But most people can't get the emotional and mental health support they need.